News from PolyBio Research Foundation
- Thread starter SNT Gatchaman
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V.R.T.
Senior Member (Voting Rights)
I do get a little bit frustrated seeing Polybio get all this money just falling into their laps whilst brilliant MECFS researchers are having to go around hat in hand begging for funding.
They don't seem to do a lot of immune research that doesn't revolve around viral persistence, which imo is almost certainly a dead end.
I do wonder if it would be possible to get to the point of visibility where Edinburgh or Fluge and Mella are getting donations approaching this magnitude. After all the reality is they are much more likely to get to the bottom of this than the viral persistance people, if only we could persuade rich relatives of pwME/LC of this fact.
Utsikt
Senior Member (Voting Rights)
They’ve got an attractive sales pitch from the perspective of outsiders, and people with experience and connections from private equity and tech.
V.R.T.
Senior Member (Voting Rights)
This is the thing that I'm wondering is how do we pitch SequenceME or F&Ms studies or the other good underfunded stuff so that these people see the potential for a breakthrough.
As far as I can tell Polybios pitch is just 'find virus, make virus go away'. Which maybe is it's power. But why doesn't 'Sequence all the genes, figure out the mechanism, fast track treatments' have the same power. Or 'this drug might have put half the study participants into remission'. It's not that much more complex of a concept. I guess the whole going all in on LLMs thing shows tech people are very susceptible to hype.
Or maybe it is all about the connections.
Felis Catus
Senior Member (Voting Rights)
Connections and marketing? E.g. I don't remember ever seeing F&M mentioned in LC groups although a lot of people have ME/CFS diagnosis, too. DecodeME is widely known in the community but I'm not convinced people follow Ponting's group as much as Polybio groups. E.g. Putrino seems to be working a lot on visibility and promotion of whatever he's involved in. He's everywhere!
I don't know how much patients are influenced by scientists on social media and how much it's about a human desire for a cure. I might've completely misjudged it but my impression is that people are more excited about all sorts of trials, ongoing or planned, than basic research into the mechanisms of the illness(es). It might also be that people generally think a lot is known about LC and ME/CFS because their doctors and influencers have "biological" explanation for all of their symptoms.
Utsikt
Senior Member (Voting Rights)
The PE pitch for SequenceME would be something like:
1) Fast tracks research and funding acquisition
2) Enhances efficacy of drug trials
If they wanted to align themselves with some of the current buzzwords..
3) Enables precision medicine
And of course uses state of the art AI methods!
V.R.T.
Senior Member (Voting Rights)
Yeah that sounds about right. perhaps the people they're getting in to help with funding using the first amount of SequenceME will figure out how to pitch it to the Silicon Valley crowd.
V.R.T.
Senior Member (Voting Rights)
But it uses the wrong kind of AI - the actually useful kind!
Timko
Established Member (Voting Rights)
100% agree. What gives me some hope is that their wording seems to change slowly from only „viral persistence“ to „viral persistence and immune disregulation“. Although I dont think they will every completely drop the persistence stuff
Chandelier
Senior Member (Voting Rights)
Dr. Amy Proal and Dr. Timothy Henrich on Long COVID, Oncogenic Viruses, and the Latest Research
Explore the latest Long COVID virology with Dr. Timothy Henrich and Dr. Amy Proal. Discover if the virus has oncogenic potential and what UCSF’s LIINC study reveals.
www.latimes.com
16min video interview
Dr. Amy Proal and Dr. Timothy Henrich on Long COVID, Oncogenic Viruses, and the Latest Research
By Faith Pinnow Host Aug. 24, 2026
Dr. Amy Proal, microbiologist and co-founder of PolyBio Research Foundation, joins Dr. Timothy Henrich, Professor in Residence at the University of California San Francisco, to discuss cutting-edge research into Long COVID and whether it may be an oncogenic virus.
Dr. Henrich gets into his exciting research as co-principal investigator in virology for the long-term impact of COVID-19 study program at UCSF, and sharing some of what’s emerged from his comprehensive investigation.
Dr. Henrich gets into his exciting research as co-principal investigator in virology for the long-term impact of COVID-19 study program at UCSF, and sharing some of what’s emerged from his comprehensive investigation.
Mij
Senior Member (Voting Rights)
"At the Harvard/MIT Martinos Center, Dr. Mario Murakami and the VanElzakker lab are using ultrahigh resolution 7T fMRI to understand how changes to cerebrospinal fluid (CSF) flow in people with Craniocervical Instability can produce a phenotype similar to that seen in ME/CFS and other neuroimmune conditions.
The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain.
Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”
2/ PolyBio is actively supporting this project using 7-Tesla fMRI in patients with infection-associated chronic disease (e.g. LongCovid and ME/CFS) to determine evidence of structural abnormalities in the dorsal brainstem and craniocervical junction; as well as cerebrospinal fluid flow problems, brain blood flow issues, intracranial pressure changes, and dysregulation of vagus nerve signaling.
3/ This study builds on growing evidence that a portion of patients with IACI, including Long COVID and ME/CFS, possess functional and structural brainstem abnormalities. The brainstem itself is additionally susceptible to CSF flow changes and contains dorsal nuclei that control autonomic function, pain, sleep, and sickness behavior—which, if dysfunctional in patients, could largely alter these functions.
4/ Early findings presented by Dr. Murakami providing evidence for these particular structural and functional differences in the IACI patient population may reflect a pre-existing vulnerability factor, or a consequence of pathology related to acute illness effects on
The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain.
Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”
2/ PolyBio is actively supporting this project using 7-Tesla fMRI in patients with infection-associated chronic disease (e.g. LongCovid and ME/CFS) to determine evidence of structural abnormalities in the dorsal brainstem and craniocervical junction; as well as cerebrospinal fluid flow problems, brain blood flow issues, intracranial pressure changes, and dysregulation of vagus nerve signaling.
3/ This study builds on growing evidence that a portion of patients with IACI, including Long COVID and ME/CFS, possess functional and structural brainstem abnormalities. The brainstem itself is additionally susceptible to CSF flow changes and contains dorsal nuclei that control autonomic function, pain, sleep, and sickness behavior—which, if dysfunctional in patients, could largely alter these functions.
4/ Early findings presented by Dr. Murakami providing evidence for these particular structural and functional differences in the IACI patient population may reflect a pre-existing vulnerability factor, or a consequence of pathology related to acute illness effects on
Jonathan Edwards
Senior Member (Voting Rights)
Pretty much every statement in that X message seems to me wrong.
Maybe next year things will change. It gets monotonous.
Maybe next year things will change. It gets monotonous.
bicentennial
Senior Member (Voting Rights)
Does anyone here have an idea what ultra-high resolution 7T fMRI can scan that helps us understand ME/CFS? Can we keep our eyes on the ball?
I thought VanElzakker was helping people reach a better understanding, since his friend suffered ME/CFS.
If I can I will tidy this up:
I thought VanElzakker was helping people reach a better understanding, since his friend suffered ME/CFS.
I want him to know my profile was hijacked using his lab (as explained in the Edit below). Is he on board with this? Did he listen to this video? Can he state a disclaimer to correct what his lab got associated with, seeming to endorse?
Edit: what I meant was that the established UK profile of ME/CFS is also my profile and Dr. Murukami hacked it, altering my profile to fit the international gossip about what ME/CFS might be if not what NICE established, as a profile
Murukami hijacked my profile as follows. He presents this implausible chain of evidence for his ME/CFS hijack. "As everybody stated" is not evidence and does not warrant ripping open my envelope for his unbounded inclusion of all similar conditions. First these were "associated" but only by a resemblance. Thereby they all became included as if they are all a form of ME/CFS. On his say-so.
At least it is now out in the open that someone decided to convert ME/CFS to Symptoms. Then ... etc etc. Is this an invocation or a convocation? Can he not research CCI theory without angling it to get a post-covid scale of funding?
-------------------
"So I want to start talking a little bit about the ME/CFS.
"As everybody stated, ME/CFS is this big umbrella of conditions, and the international diagnostic criteria is basically, Symptoms.
"So it envelops a lot of like causes that are different from each-other.
"Most of them are post chronic inflammatory conditions after an infection... But..."
-------------
Unsupervised gossips will not differentiate the encyclopaedic resemblances of life. Gossip is raised to the state of the art. The state of the art does not make it science. Already homeless, Renegade and Polybio research both stepped off the edge. Enthusing intensely around a table rallied enough appearance of scientific endorsement to launch a proposal.
Like Simon Wessely said, "it is more of an art than a science, but it is a very attractive idea"
Turning science to commerce is enterprising. Can we keep our eyes on the ball?
I thought VanElzakker was helping people reach a better understanding, since his friend suffered ME/CFS.
I want him to know my profile was hijacked using his lab (as explained in the Edit below). Is he on board with this? Did he listen to this video? Can he state a disclaimer to correct what his lab got associated with, seeming to endorse?
Edit: what I meant was that the established UK profile of ME/CFS is also my profile and Dr. Murukami hacked it, altering my profile to fit the international gossip about what ME/CFS might be if not what NICE established, as a profile
Murukami hijacked my profile as follows. He presents this implausible chain of evidence for his ME/CFS hijack. "As everybody stated" is not evidence and does not warrant ripping open my envelope for his unbounded inclusion of all similar conditions. First these were "associated" but only by a resemblance. Thereby they all became included as if they are all a form of ME/CFS. On his say-so.
At least it is now out in the open that someone decided to convert ME/CFS to Symptoms. Then ... etc etc. Is this an invocation or a convocation? Can he not research CCI theory without angling it to get a post-covid scale of funding?
-------------------
"So I want to start talking a little bit about the ME/CFS.
"As everybody stated, ME/CFS is this big umbrella of conditions, and the international diagnostic criteria is basically, Symptoms.
"So it envelops a lot of like causes that are different from each-other.
"Most of them are post chronic inflammatory conditions after an infection... But..."
-------------
Unsupervised gossips will not differentiate the encyclopaedic resemblances of life. Gossip is raised to the state of the art. The state of the art does not make it science. Already homeless, Renegade and Polybio research both stepped off the edge. Enthusing intensely around a table rallied enough appearance of scientific endorsement to launch a proposal.
Like Simon Wessely said, "it is more of an art than a science, but it is a very attractive idea"
Turning science to commerce is enterprising. Can we keep our eyes on the ball?
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bicentennial
Senior Member (Voting Rights)
How did it happen that the "post-infection" umbrella included ME/CFS, and now ME/CFS includes the "post-infection" umbrella - and a whole lot more to come?
How come ME/CFS is the fulcrum and focus for this swerve, instead of Long Covid which has the numerical majority and is usually proposed to scale up funding?
Long Covid is still a minor, in its developmental minority, without the experience of age.
My 1st inkling was upon being told that ME/CFS is a symptom of POTS.
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I don't understand what you mean about your profile being hacked. Can you clarify?
bicentennial
Senior Member (Voting Rights)
Sorry @Trish and everyone - what I meant was that the established UK profile of ME/CFS is also my profile and Dr. Murukami hacked it, altering my profile to fit the international gossip about what ME/CFS might be if not what NICE established, as a profile
Ah, OK, so you are talking about them changing the diagnostic criteria and list of symptoms for ME/CFS as spelt out by NICE, to something that fits better with what they are seeing in people with CCI?